The strain and anxiety are etched in the fine lines around her eyes. Her exhaustion shows in a sometimes short fuse. She's the first one up in the household and the last one to bed.

In the past year, Karen Garner, 43, mother of two school-age children and caretaker to her husband Jim, 51, who has Early Onset Alzheimer's, has funneled her frustration and fears into advocacy for the disease. In addition to working full time, she attends support group meetings with him, sells raffle tickets for fund-raisers, speaks at public meetings, lobbies for legislation in Washington, and writes a blog, "Missing Jim."

It's a public role the Newport News mother has taken on unwillingly, but that she acknowledges she can do. "We're celebrities for the wrong reasons. It's wonderful that everyone's so pleased to see us, but it's not for a good reason," she said, recalling Jim's opening pitch at the Peninsula Pilots' Alzheimer's awareness night in August. "It's bittersweet that we get to do things we wouldn't have otherwise."

She insists that others need to step forward too. "Thousands of people are going through the same hell. People need to know. This disease is much more than about losing the keys. It's much, much more. It envelops you and the family, and your extended family and your friends. It's a disease that can last 10 or 20 years," she said.

Karen's life

Karen knows her current problems pale in comparison to what the future holds. She has already seen a "huge" decline in Jim in the past year. She worries about the children. "They have to come first," she said firmly. To make that happen, she maintains a breakneck schedule, routinely putting in 15-hour days by rising early, heading to work, coordinating Jim's medical appointments and therapies, making a lightning change, checking homework, cooking dinner, and ferrying them to music activities and after-school sports.

Her down time typically comes after dropping one of the children at an activity, or accompanying Jim to a medical appointment. "This is like a vacation," she said of an hour spent in the corridor at the National Institutes of Health while Jim had a brain scan.

She worries about when he can no longer drive. She relies on him to pick up the slack when she can't chauffeur the children, Bradley, 9, and Frankie, 12. At his current rate of decline, she anticipates a 2-year window — at most.

Last year, she agonized over the children not having the childhood she and Jim had envisaged for them. Now, from necessity, she's less hesitant to demand more self-reliance from them regarding homework and household chores. They remain largely unfazed, and she admires their easy acceptance of Jim and his foibles that cause her such frustration. "I need to learn to let things go," she admitted.

She's constantly forced to balance priorities, choosing to lose much-needed income in order to spend time with the family. She had exhausted her vacation time by mid-year, but took unpaid vacation to go to family camp in Pennsylvania, a family tradition they're able to maintain. This year, her parents, who live in North Carolina, accompanied them. "I'm really glad they did. I got to relax," said Karen.

Once very social, they've stopped having people over to the house, and she only rarely meets up with her girlfriends now. "I think it's hard to be my friend right now," she said, tearing up. "Often I don't feel social. I don't want to pretend that everything's all right."

It's also hard for her to accept help, "to be the one needing help." Friends installed new lights in their bathroom. Others have brought them dinners. "I'm getting better at it. They want to help," she said. "They can't cure him. They can't help us financially."

Finances are a constant worry for her. She's thinking ahead to when she'll have to pay someone to stay with Jim. "I don't know how we'll do it. It's more than we bring in in a month," she said. Their situation with Early Onset is different from most, she explained, as usually the caregiver is someone looking after a parent with Alzheimer's or dementia and there are assets that can be liquidated, or one in a couple can give up their job to do the caretaking.

She also misses "the real Jim" and feels guilty when she vents her frustrations with him. "I get to choose what we eat, when we eat, what we watch on TV, where we go. Some people would think that's great but it makes it a very lonely partnership," she said. "I want to be with someone who initiates a conversation, someone who has an opinion. He is emotionally detached. He doesn't care one way or the other."

Her advocacy

Government funding for research into Alzheimer's, for which there is no cure or effective treatment, lags well behind other high-profile diseases, such as cancer and HIV/AIDS, with less than $500 million allotted.

Karen wants to change that. Committed to raising awareness and funds for research, in the past year she has also become a voice for caregivers. Nationally, caretakers are taking the brunt with the cost of care, mostly provided by family, estimated at $203 billion annually, and expected to grow to $1.2 trillion by 2050. The cost of stress-related health problems suffered by caregivers is in the millions annually.

She's proud of the difference she's making. Most recently she participated in a national Round Table in Washington D.C. sponsored by Home Instead Care to coincide with the release of the 2013 World Alzheimer Report. "We had lots of speakers, including two diagnosed with Alzheimer's. But when Karen started speaking, that's what brought the house down. That's when the tears started rolling. She's a remarkable woman," said publicist Elin Nozewski.

Karen said simply, "I think I did my job. I put a face and an emotion with all the stats that were being conveyed." She also gave an interview to CNN.com and wrote a blog post for the Chicago chapter of the Alzheimer's Association that garnered 6,000 likes.

She doesn't have time to respond to everyone who responds to her Facebook posts, but she tries to answer those who leave personal messages. Her twice-a-week blog posts, http://www.missingjim.com, generate grateful feedback from people who share their stories and thank her for helping them.

In the summer she took her children to Washington D.C. to lobby legislators for support for the HOPE for Alzheimer's Act (see info box). They met with Sen. Mark Warner who signed on almost immediately. His chief of staff, Luke Albee, gave them a tour of the Capitol and took them to lunch. "She's politely and respectfully relentless in her advocacy," Albee said.

She was instrumental, too, in getting U.S. Reps. Scott Rigell and Robert C. "Bobby" Scott to lend their names to the list of the bill's co-sponsors.

"She really represents the voice of the caregiver. She brings a lot of value to the conversation," said Dan Wieberg of Home Instead Senior Care. "We all hope and pray for a cure for the disease."

In her most recent blog post, Karen wrote about her frustration with Jim. "I am losing my hope. I am losing my fight. That is sad. To lose hope and to stop believing and fighting is a sign that you have accepted the outcome. That is very distressing and uncomforting.

So, I continue to fight. But not with Jim. Not with the disease in my home. I will fight this disease on an even playing field. Where it counts. Raising money, raising awareness and fighting for research and help with care." She ended with an invitation for people to join her in the Walk to End Alzheimer's.

The HOPE (Health Outcomes, Planning and Education) for Alzheimer's Act (S.709/H.R. 1507) was reintroduced this year by Sens. Debbie Stabenow and Susan Collins and Reps. Edward Markey and Chris Smith.

The act would:

• Provide Medicare coverage for services including clinical diagnosis of Alzheimer's, care planning for the newly diagnosed and their caregivers, information about medical and non-medical options for treatment and support;

• Require documentation of the diagnosis and care planning in medical record.

Nearly a third of those with Alzheimer's and dementia are dual-eligible for Medicaid/Medicare; the diagnosis raises costs to Medicare by three times and to Medicaid by 19 times. The direct costs of care, according to the Alzheimer's Association, are $203 billion, of which $142 billion is to Medicaid/Medicare.

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